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Tuesday, July 24, 2012

TLC: Tina-Loving Care

Douglas Winslow Cooper

When
I came into Tina’s bedroom yesterday, I was surprised. She and her nurse were
watching TV together. Not unusual. My beloved wife, now quadriplegic and
ventilator-dependent due to multiple sclerosis, enjoys television, watching
anything from news to Dr. Oz to travel to home and garden to documentaries.

We
have had around-the-clock nursing since Tina Su Cooper’s nearly fatal MS-caused
aspiration pneumonia in February 2004. Our nurses have come to like or even
love Tina, and they stay for years, giving her what we call “TLC” for
“Tina-Loving Care.” Tina is an exceptional patient, and we select her nurses
carefully. The nurse in this instance was raised in Britain and of Jamaican
ancestry, and has lived in the U.S. for a decade or so.

Although
there was much that Tina liked about Britain when she spent her junior year
abroad there in 1964, she noted that her Asian ancestry generated a certain
cool distancing from many of the British people she met there. She and others
“like” her—blacks and Asians—were segregated in a new dorm, rather than interspersed
with the “home” folks. Perhaps such a situation would no longer occur there,
but it hurt a bit then. No doubt our nurse could tell of similar slights here
and there.

But
what had surprised me and pleased me deeply? Our nurse was holding Tina’s hand,
the first time I had seen that done by any of our nurses, though many will give
Tina a kiss of greeting or goodbye.

Douglas Winslow Cooper, Ph.D., a retired
environmental physicist, lives in southern New York State with his beloved
wife, Tina Su Cooper, a former editor at the Encyclopedia Britannica and
mother of two. Tina was first diagnosed with MS in 1981 at the age of 37, and
she has been quadriplegic and ventilator-dependent at home for almost eight
years. Tina is the central figure in Dr. Cooper’s book, Ting and I: A Memoir
of Love, Courage, and Devotion, available from Amazon. Barnes and Noble, or
their website, tingandi.com.

11 comments:

I have enjoyed your blog posts on your wife’s condition and the fact that she is now not only quadriplegic but also ventilator dependent due to MS. I can read through your posts that this has been most devastating for the two of you. I was diagnosed with MS on May 11, 1995 at the age of thirty. I spent 10 years as a human research subject at UCLA MS Research from 1995 to 2004. We did a lot of good work and got several treatments FDA approved, there were also failures through those years, which left permanent scars quite literally on my person.

I became secondary progressive in 2010 and I am now on disability. I have been blessed with a loving wife who married me in 2005 knowing my condition. While I am still ambulatory and can take care of myself for the most part I still struggle with the little things from day to day as all of us with this wasting disease do. However, now the progressive nature of my illness has enacted a new set of rules I put in place over fifteen years ago.

I told my wife that I had a DNR that I put In place in 1998 and an agreement with both my neurologist and general practitioner that I was not to be placed on a ventilator should I suffer respiratory failure due to MS. Both physicians where at first reluctant to follow my instructions as was my wife when we met in 2005. I however feel that it is quality over quantity in life. For me personally, I cannot see the purpose in living my life artificially. I have amended my DNR to allow my physician to place me on a ventilator if it were for a brief period, however with strict instructions in my DNR and living will that should there be no way for me to breathe on my own in a given time frame that I am to be removed from the ventilator.

I respect your love and devotion to your wife in her personal battle with this wasting disease, as well as your courage in the face of such adversity. For me, my personal preference is to take my leave of this world should my MS take such a terrible turn. I can’t imagine helplessly watching my wife deal with me in a permanent state of ventilation, I am too independent and I love her too much to have to passively watch her suffer and care for me in such a permanent and hopeless situation. I know we all have to make choices on the course of our lives when dealing with, in our case Multiple Sclerosis. I just feel after ten years in human subject’s research, and watching countless friends lose the battle to this disease; that we each need to take responsibility for our condition and plan the appropriate steps that we feel will best benefit our lives, and the lives of those that we love. I love my life but have come to accept that in my personal case I feel it better to leave a memory of motion.

I appreciate your careful communication of your condition and the history that brought you where you are. I am also thankful for your compliments on my past blogs. You and your wife deserve great credit for your joint heroism in the face of MS.

Let me presume to ask you to reconsider further your DNR instructions. Before the "critical point" [where DNR would apply] in the illness, we think we know what we would want done. When it arrives, we may have a different opinion or, worse, not be in a position to have or communicate an opinion.If we survive, we might have yet another opinion about what should have been done.

Tina's life is still precious to her and to the many who care about her. Your life might well be, also, even after more devastating losses due to MS. [Perhaps more planning for coping with that situation would be productive.] You and your wife are now one, and she may feel, as I do, that the well spouse has an opportunity, rather than just an obligation, to care for the ill spouse, as "work is love made real."

Tina and I are not just waiting for The Cure, but rather we are living these days that we are blessed with as best we can. They are precious, still useful, of uncertain number.

I think DNR orders are generally a bad idea. They make that patient a second-class citizen in the hosptial and make the medical professionals there less diligent...a statement I cannot prove and firmly believe.

Thank you for your kind response and your thoughts with regard to my decisions with regard to the “DNR.” While I do understand your thoughts and feelings with regard to “life” there are two different forms of it. As an environmental physicist, I am sure you embrace the organic nature of the mortal.

I have had conversations with many, many people with regard to the “DNR” process. I mean no disrespect. However: it is easy for one to look upon the condition that your wife Tina and I share and say “life at all costs.” There is a romantic quality to the idea. However, as much as you want to understand and cognitively validate life you can’t feel what Tina and I feel. Once again I mean no disrespect. I came to the “DNR” decision early after watching two wonderful friends die agonizing deaths. They put up brave fronts but in quiet conversation with me they confessed that they would much rather have died then to live what they were living. In both cases they confided to me that they were doing it for their family, more directly their spouse and in both cases they died. Leaving their husbands and family’s to mourn them as that is the nature of life.

MS is a horrific disease, one that I know intimately and endure every day. While my MS is now progressive I make the best of each day and enjoy every moment that my wife Tracy and I have together. My wife earned her MFA in English from the University of California Irvine in 2001. She is a beautiful published poet and a great communicator. She has watched me battle my disease for the past seven years and would not trade a day of our time together. However, she also understands the physical pain that I am in second by second of each and every day. I have chosen life…but that certain life that has a quality to it. I have no desire to live on any form of life support. This is not a decision I came to lightly and was made before I ever met my wife.

There is a quality of mercy that one must allow oneself when facing this disease. You can no more understand what is going on in my body or how it has ravaged and continues to ravage me then your wife. I know it is hard to fathom being on the outside looking in on our illnesses but we are suffering every millisecond of every day. Those who choose to hold on, one hundred percent of the time are living in their current state for others not themselves. My wife is the first enforcer of my “DNR” and if she cannot enforce it then I have left it to my GP who has been treating me for 18 years. This is not a decision I came to lightly. The one thing that I know for certain is that if I hold on too tight to life it will in the end make me and those around me suffer more than if I allowed myself to sleep, wherever that sleep might take me.

Sometimes letting go is the hardest part and as long as one holds on so will all concerned. I have chosen to let go when and if that moment comes I am secure in the decision that I have made.

Thanks for your thoughtful reply. Individual circumstances vary so greatly that there is not a good universal answer.

Tina is not in pain---morphine every three hours handles that---and she is happy, rather than unhappy. Her morale is a serious concern for all of us here.

When she was near death and in pain, I told the doctors to use as much pain-killer as needed to keep her from suffering, accepting that it added to her risk of death. I do not think anyone should have to endure prolonged severe pain.

Being willing to risk a death is somewhat different from choosing to let someone die by withholding treatment (DNR), a distinction I believe to be valid.

If Tina were unhappy and in pain, the situation would be much more difficult. I'm not a believer in "life at all costs," but I do want to resist the temptation to call it quits prematurely.

Each day we have to make hard decisions. I am glad to know that Tina is receiving morphine every three hours it not only eases the pain in her body it also relives the soul.

I am also glad that we can agree to disagree while keeping an open dialogue. I wish you and Tina nothing but peace. May you both live long. I wish more people embraced the moments in life the way you do. Your love for Tina comes through in every word that you write.

Be well I will follow your posts as long as I am able or until you cease posting.

The human touch is so important. My husband, who works full time, is my primary care give. Sometimes I cannot get up from a chair or get a shoe on it's nice when bhe is home to help. We've been married 33 years. You are an inspiration to caregivers, I often have my husand read your stories. My MS is not progressive, my challenges minor compared to Tina's, but I feel like I know you both. Please keep writing!

Congratulations to both of you for 33 years of marriage. Thank you for your sharing of my blog items with your devoted husband. Care-givers are often pleased to have the opportunity to do something for those they care for and care about.

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